Monday, 28 October 2013

I often wonder how clinical psychologists can look at
someone with dementia, and come out with the correct results; perhaps I am
missing something here,

As I have Lewy Body dementia, I don't use the mini mental
tests as they are no good on people with Lewy Body Dementia, or so I am told by
the consultants, because they say the results are misleading.

So why is it when I go to see a Clinical psychologist, I
don't feel 100% happy

I do longer tests where they always ask lots of questions and go over, lots of
paragraphs and stories, with names and addresses, and then ask you questions.

Then when you cannot remember, they go back over the
questions with prompts, with a series of answers in which you have to pick the
correct one out, and can only answer yes or no, to each, but at best this is
guess work or just pure luck if you manage to get it right.I end up with so many bits and pieces flying around in my head that I have to just try, even though it could well be the wrong answer, and this adds extra stress at a time when we don't need it.

But how can this be right if we simply don't know the answer
in the first place, and take a guess at the answer.

In this life, whether at work or anywhere else, we don't get
prompts when we get things wrong, so just how does this work and how do they
get the results right.

I do not understand these people, but perhaps they know what
they are doing, I simply don't understand it.

To me if I don't know the answer, then it’s simply gone,
because trying to force myself the think of an answer just causes unnecessary
stress.

Sunday, 27 October 2013

Over the years I have always enjoyed my holidays, although over the last few
years, holidays have been stressful, due I suppose to the fact that I am out of
my comfort zone, in an area which is perhaps fast or unknown.

I do struggle with aircraft these days, I suppose again because it's a
territory which is not normal to me these days.

Recently we had a holiday in Turkey, and although I was looking forward to
seeing the historical sights, I guess underneath I was very nervous of the
unknown.

The flight out was awful and I needed my inhalers to get me through the
journey and I had problems breathing at first, then after a while it all settled
down. I have never had to use Ventolin on a flight before so that frightened me
a little, but luckily for me my wife had the inhalers in her handbag.

When we arrived at the hotel, it was a little strange at first, but after a
meal we went out for a walk around the town centre and the markets in OluDeniz,
and I started to feel at home which was odd, but I guessed that was due to
everyone speaking English.

The next morning after breakfast, I decided to go for a walk round, with my
camera, and never thought about any problems.

I was away for around an hour, then realised that even though the town was
small, I had no contact in any way with my wife. The odd thing was, that I was
so realixed it did not bother me at all.

This shook my wife as she expected all sorts of problems, but in many ways I
was more at home than she was.

Apart from one of the couriers, no one knew about my problems, and to be
honest I was happier that way. I suppose the one thing which helped was the
fact that everyone out there was so happy and helpful, and that makes a vast
difference to me when I am away, so I guess it has the same effect on others
with this illness.

The only thing that spooked me was the fact that Para gliders landed on the
footpaths and sometimes across them, which was a fright when I first noticed
them, but after a while I realised that if I stayed close to lamp posts, trees
and shops I was safe

On another day walking along a beach bear footed near to the sea, I got a
terrific pain shooting through my foot and into my ankle, and my wife said I
shouted.

I could hardly walk, so she took me to the Red Creasant hut “First Aid"
on the beach, where I was treated, the spike was taken out, and told that it
had been a fish buried in the sand something like a weaver fish which is
poisonous, if not treated straight away.

I was a bit sore for a few days, but never took my trainers off on the sand
again, and chuckled later, thinking it was good that I had not sat down on the
sand. I don't think my wife was amused at me saying that as it gave her quite a
shock. I confess that I have never felt a pain like that before, and it was
like a bayonette going through my foot and into my leg, and found it hard to
believe that a fish could do that,

However apart from that I enjoyed this holiday, so much so that we may well
go back again , unless we find somewhere else to go, and somewhere the
insurance company will allow us to go without charging more for the insurance
that we paid for the holiday

If only all holidays were as stress free as that one, but I know that in all honesty, that the next holiday could be vastly different, because the only time my memory gave up was doing my photography.

I did find this very hit and miss, as I could not always remember the settings.

I do my best to be independant while we are away, but when needed I still stay within reach of my wife, and always carry an address book and a marked map in my pocket, so that when things get rough I can get back to the hotel.

I also had my mobile phone with the hotel fixed firmly on the mapping system, so I do try to protect myself.

However this was a very small town in Turkey, had it have been a large town or city I would never have gone anywhere with out my wife.

I would point out that the hotel room was easy to get around and there were no nasty or upsetting, points, it was very dementia friendly.

I confess that I could not take onboard what the guides were saying around the historical sights, but I just walked around taking in the wonders and taking photographs

Wednesday, 23 October 2013

Last November in a moment of madness, I pressed the wrong button and completely wiped my blog, something which came as a complete shock.

I could not work out what I had done, and still don' t remember what happened, I can only put it down to the Lewy Body Dementia.

I had been using this blog for around four years and it had around 10,000 readers, in well over 80 countries, so to lose this was devastating.

In desperation I contacted Google blogspot, who said that they could not do anything without my credit card number, but as I pointed out, I don' t use one due to my illness, so they said that they could not help me.

The next day when it all sank in, I realised that I had two choices. One was to forget it and let it go, the other was to start all over again.

I had written all of the pages in word on my computer and everything was saved, so I took the second option and started all over again three days later on the 11-11-2012 the day of our wedding anniversary.

I started this thinking that this new blog, would not get as good as the original blog, but up till now it has over 21.000 readers in 103 countries which is amazing.

The other day while I was looking at the blog I noticed a section, which I had not seen before, so I wrote a note about my problems with the old blog, only to find that had I gone here straight away, "although I had never noticed the title", I could have had the
blog back as it was last year.

This illness drives me mad at times because there are days I simply do not see the obvious.

I have received this from a friend who is looking for help
and support, and wondered if anyone has any advice they can give him. Any
answers will be passed back to them.

As I have never been in this situation I really could not
answer the question below.

Comment text:
My wife has LBD and is living in a care facility. We are Canadians who have
done a lot of traveling and have lived outside of Canada on occasion.

A primary
reason my wife is in a care facility was that I burned out as her sole
caregiver. I have recently been wondering about what it would be like for us
both to live, together, or at least snowbird together, in a less expensive
country where we might be able to afford live-in or daily help.

The breadth of
your blog, particularly as you had heard from people in Ecuador, where I was
thinking about cost of living, caught my attention and I thought you might
provide me a link to the LBD community in Ecuador. Otherwise, anyone out there
relocated to be able to access affordable domestic help?

Sunday, 20 October 2013

I realise that I am opening a can of worms so to speak, but here goes.

This is a subject which causes a great deal of problems
these days, and I can quite understand the stress it causes, to all concerned
whether they are the person with the illness, ora carer or family member.

By law we are supposed to contact the DVLA in the UK to
notify them that we have the illness, and failure to do so would possibly stop
us from making an insurance claim, if we were involved in a traffic accident,
no matter whose fault is was.

To me personally I do feel that this should be taken out of
our hands, and should be dealt with by the medical profession, as they are
clearly there to advise us in medical matters, and if we are classed as unfit
to drive, then they should clearly say so and notify the authorities.

Because in my opinion that leaves them open to the person
with dementia or any other illness taking them to court for neglect of their duties.

I gave up driving when the illness started and while I was
still working, because I had no support, from the medical profession and was
not given either advice or medication. This caused some problems at work, but
it was then that my wife realised something was wrong with me

A year later when we had moved back to our family home, I
had to be re-diagnosed because the original hospital had lost my notes, but
once this was done I was give advice about living well with the illness, and
was also given medication, which in all honesty I did not expect to work.

After around 18 months I realised that I was or seemed more
switched on some ways than the vast numbers of motorists driving in our area of
the UK, so I took the bull by the horns and re applied to get my driving
licence back.

I agreed with my wife at the time that I would never drive
unless I felt up to it, and if I ever felt odd or unwell, I would stop the car
when it was safe and get out.

I have driven by myself on occasions but only short
distances, and I did this so that I felt comfortable if an emergency arose at
home.

However many people simply don't give up driving, either
because they have driven all of their lives, and don't see anything wrong with
their own driving, and why would they, or they simply don't listen to those
around them, who say they should give up because their driving standards have
dropped to a level where it is classed as unsafe.

I knew one person who kept driving even though, someone had
to sit next to them, and tell them which corner to drive around, something
which shocked me.

I started driving in 1968, and even in 2003 when things
started to go wrong, I decided in my own mind even though my employer got very
upset, that I was giving up driving, and it never really bothered me.

The reason was that, I was more concerned about hitting or
killing someone else that I was about me being able to drive, and this has
still stuck in my mind.

Yes I have my licence back but only on a yearly basis, and
if it goes, well so what, it’s not the end of the world, as I have had all of
the years extra through the medication, and that means more to me than anything
else, especially seeing my Grandchildren grow up.

However in this day and age, I am staggered to see so many
young drivers on the roads these days, who do intensive driving courses in very
short times, and don't really get a lot of experience in all conditions as we
used to do.

Is that why so many of them are killed their first few years
or months of driving.

I look around at many of these and think that its time
something was done, to sort the standard of driving out once and for all. I
simply don’t see how someone doing an intensive driving course over a week or a
month can possibly pass a driving test, as you cannot learn everything about
driving a car in that time.

Apart from that people can pass a test and then step into a
high powered car which to me is barbaric, because there is no way that they can
feel in control of a high powered car.

Surely like a motor bike, they should go through a process
and step up when they are competent to do so, or when someone else says they
are ready to do so.

But are these young motorists any safer than someone with a neurological
illness? I don’t think so, yet many people with these illness may feel understandably
victimised, when they see some young hooligan tearing around the roads with
little or no concern for others.

I do know many people who have some form of dementia who
drive quite a lot, and these people have had the illness longer than I have,
and some of these youngsters really get at them, because they are driving
carefully rather than racing.

I do know many people who have some form of dementia who
drive quite a lot, and these people have had the illness longer than I have,
and some of these youngsters really get at them, because they are driving
carefully rather than racing.

I do know that some areas of the UK have driving courses where people with
the illness can go for and assessment, to see if they are competent to drive,
and that to me is a brilliant idea.

As long as the person listens to what is said by the instructor, and agrees
to give up if they are classed as unsafe. Perhaps everyone should have a driving
assessment these days, dementia or not.

It’s now time to reapply
for my licence again, so it’s a case of wait and see whether I am allowed to
drive again after Christmas, or whether it’s back to the poor man’s taxi “The
Local Bus” But if it comes to that well so be it.

Thursday, 17 October 2013

Since before just before I was formally diagnosed as having Early onset Lewy Body Dementia, I have struggled with very bad dreams and in some cases nightmares.

These things have little or no direct link to normal life that I know of, and they are very frightening, and sometimes difficult to break free from.

I remember the first one I had which I told my consultant about when I saw her at the clinic.
It was at this point that I learnt that these were all caused by my illness and not medication of any kind.

On some occasions I have got out of bed, and gone to a different room simply to break the cycle or at least try to.

I say that because when we wake up from these horrors as I call them, its difficult to decide the difference between the nightmare and reality. I have at times resorted to doing things like hitting the wall so that I know I am awake, but then that leads to sore hands the next morning.

Sometimes after doing something like watching television for half an hour, I have returned to bed only to find the whole process start again from the point it stopped. That is also very sad as I get out of bed feeling very tired and stressed.

When I have these really bad horrors during the night, I can usually remember the whole thing in great detail for at least two days afterwards, and I have written about these before, as a way of trying to find out what is causing it all to happen.

I often wonder why it is people having these don't end up having a heart attack as they are so bad, perhaps they do and its not looked into as to why it happened.

I was once given medication, which was supposed to control it all, but found it got so bad that this had to be stopped altogether, because I simply could not wake up, and in the end tried to climb out of a bedroom window to get away from this bad horror. Luckily for me the windows were locked, because I was in a hotel and our room was on the third floor.

However I understand that people who have this form of dementia struggle with some medications, so they are only used as short trials.

I recently had a very bad night which shook me rigid afterwards when I looked back at it.

It had been a very bad night and I can remember getting out of bed on two or three occasions, and sat in the room next door until I felt safe to return to bed. However each time I returned to bed the same horror started all over again.

Eventually I did wake up, and went to have a cup of tea, at which point it dawned on me, that I had never actually left the bed during the night, I had only dreamt I had, which accounted for the nightmares going on so long.

I was then so shocked about this that the next night, I did not want to go to bed, because I kept thinking, what if I thought I had woken up and had gone to the toilet? The embarrassment would have been too much for me.

So these days I live in fear of these nights, and what may or may not happen.

On some occasions I do get up and go down stairs to write things for my blog, just to try to concentrate on something for a while, but I am nervous of waking someone else up, so I don't do it every night.

Together with colleagues
Amanda Clarke (Professor of Nursing), Sue Tiplady, Isabel Quinn, Margaret Cook,
myself amongst others, we have aspirations to achieve Dementia
Friendly Community status for Northumbria University, the first in the region.
As part of this, we have planned an October performance of a nationally
acclaimed play, ‘Jack and Jill and the Red Postbox’. The play recently ran for
seven days at the Edinburgh Festival having been premiered at the Queens Theatre
in Hexham and there are a number of planned performances. The play is based on
findings from a piece of our research about living with dementia in
Northumberland communities. This research was cited in the most recent
Alzheimer’s Society National Report. I attach a flyer and a programme and
warmly invite you to join us for this performance.

We are planning very
informal post performance discussions, focusing on what is meant by Dementia
Friendly Communities and also asking you how we might develop a Master Class , a
one day forum, to share expertise, knowledge and ongoing developments in this
area.

Please do let me know if
you and or your colleagues/friends can attend. This has proved a popular play
so your early response would be much appreciated

If you are interested,
please get in touch with me, Cathy Bailey[catherine.bailey@northumbria.ac.uk] or
make contact, using details below. We will send further details of the
discussion groups along with directions to the venue.

We look forward to
welcoming you.

Jack and Jill and the Red Postbox has national acclaim, premiered at Queen’s Hall
Hexham and performed at the 2013 Edinburgh Fringe Festival, where it received
excellent reviews:

"The performances are quite lovely, gentle and very honest...Skimstone
Arts Theatre Company have made an admirable show, conceived and presented with
the utmost tenderness and understanding " ThreeWeeksEdinburgh

If you would like any
further information about living with dementia, please contact the Alzheimer
Society in Newcastle:

Wednesday, 16 October 2013

I had another extremely good day, and spent time talking about living well with lewy body dementia, to Student Nurses at Northumbria University.

This is a University where they are aiming to become one of, if not the best Dementia Friendly Nurse Training establishments in the UK.

They have very high standards of dementia training, and it's this that makes me very proud of being involved with them.

I have been there to speak to Nurses on many occasions, and sometimes this has been done in the nurses own free time which to my proves a big point, and that is they really do want to learn more about the illness first hand.

By doing this I am hoping that all future Nurses, learn how to treat people with dementia, with the care, respect and dignity that they themselves would expect from others.

I know that it is tiring doing this at times, but if this works, then I feel I am doing something to be help those who with this illness in the future.

It also gives me a real buzz when the nurses come here to my blog,and leave comments, about how they enjoyed listening to the person with dementia speaking.

Yes I may get tired at times, but I feel a real sense of achievement and this gives me a good reason to carry on fighting this illness. I am also so very proud to help Northumbria University and the student Nurses while I am still able to do it

We returned home again last night, from our holiday in Turkey, and I really enjoyed the experience.

Today however I had to do a presentation on Living with Lewy Body Dementia, to Trainee Nurses at my adopted University in Northumbria, a place which is Dementia Friendly.

I really enjoy working there are everyone is so interested in learning about this illness, but I confess the my wife and I totally forgot the we were doing this when we returned from holiday.

After a normal long journey, I struggle to do anything, at home the following day, but today I must have been on an adrenaline rush as I got on with the presentation even though I could hardly see the words I had written so time ago.

However once we got home I had enough time to grab a sandwich, and then I was flat out and dead to the world

I have one more presentation to do at Northumbria University tomorrow and another on Thursday, then on Friday I am off to London to attend a Primary Care "Clinical Studies Group" with DeNDRoN where we work with Doctors and Professors in the medical field.

Sunday, 6 October 2013

Alzheimer's Society Report

The number of older people dependent on care will rise threefold to 277 million worldwide in the next thirty years and almost half of those people will be living with dementia according to a report.

Alzheimer's Disease International’s World Alzheimer Report 2013 finds evidence of a 'global Alzheimer's epidemic' but says that a lack of caregivers and support for family members will lead to a gulf in care and support.

As thousands of volunteers around the country walk to raise funds for people with dementia this weekend, a roundtable to discuss the global challenge of dementia will take place on Friday September 20.

The event will be moderated by the BBC's Fergus Walsh and will feature key leaders from the health sector including Alzheimer's Society Chief Executive Jeremy Hughes.
Alzheimer's Society comment:

'Dementia is the biggest health crisis facing the world today, with numbers of those with the condition set to treble worldwide. People with dementia often struggle with tasks we take for granted and without support things like washing and getting dressed can be near impossible.

This report is a wake up call to governments across the world about the immediate need to put in place more care and support for the more than 100 million people who will be living with dementia in 2050 and their carers.

The government's G8 summit on dementia this year will be a key opportunity to rally support from world leaders to tackle dementia together. One in three people over 65 will develop dementia so we need to see political leadership to avoid a spiralling global crisis.'

Over the next few days I will be working through a paper, to see where we can go in the North East Of England somewhere like Newcastle upon Tyne, to get this project off the ground in the new year.

This will be the start of a new project which we all hope will get dementia projects off the ground, and will start us working with other DEEP groups around the UK, something special for those with dementia when they are in the early to mid stages of the illness

This will no doubt mean lots of e-mails and telephone calls, but it will be well worth it.

Dementia Engagement and Empowerment
Project

Innovations
in Dementia are part of a project run by the Mental Health Foundation called
DEEP, (Dementia Engagement and Empowerment Project).

Over the
course of the year we investigated

The ways in which
groups of people with dementia across the UK were actively involved trying to
influence policies and services and:-

Whether these
groups of people with dementia were interested in networking with each other.

Some findings from DEEP

There are
only a small number of groups led by, or actively involving people with
dementia, that are influencing services and policies

Influencing
work includes national lobbying and meeting with government officials, local
lobbying services, media work, training and education, participating in
advisory groups, awareness raising, and speaking at events

Most groups
undertook influencing work alongside peer support and social activities, and
were local and relatively informal.

The report sets some challenges

For groups
involving people with dementia that want to participate in a network

For
governments who need to listen to people with dementia

For
organisations working with people with dementia who want to support people with
dementia to influence policy and practice

And for dementia
action alliances the media, event organisers, trainers and researchers, who can
all change how they work to make sure that people with dementia are heard

In February
and March 2012 the project held two networking events for people with dementia,
One in London and one in Stockport. These were to:-

Celebrate the
achievements of people with dementia in influencing policy and practice.

Provide an
opportunity for people with dementia to meet other people with dementia from
across the country to exchange experiences and ideas

Enable people
with dementia to discuss the next steps in developing a UK wide network for
people with dementia

There would
also be an opportunity to hear about and discuss the main results from DEEP questionnaires

You can watch
a short film about DEEP where people with dementia talk about the activities
they are involved with

My proudest moment
now would be seeing a Local DEEP project getting off the ground in the North
East, as it’s something that has been needed for quite a few years.

I remember
the Ist UK Convention of People with Dementia when it was in Newcastle, it
inspired many people including myself to keep active and to get up and help
others as well as myself, so much so that I was asked to Chair the 2nd
UK Convention for people with Dementia.

I am not
saying that I would want to chair this group, but if we can get something
started up here, we have achieved something very positive, so that others know
that as long as you are diagnosed early enough, then there really is life after
the diagnosis, and as Prof Ian Mckeith once said,” You either use it or lose
it”

But we must remain
as active as possible, and that means we keep the brain working

Join in local
groups if there are any, or try to find some close by, something we don’t seem to
have in our area apart from singing groups, but that’s not everyone’s cup of
tea as many would prefer to sit and chat

Join up with
groups on the internet where possible although I confess that not everyone can
use the internet or a computer

Go out and
speak at events if asked, and explain what it’s like to live with dementia

Although I am
not in local, DEEP Groups, I was in at the start when this was started in
London

I keep
involved by writing my blog and keep track of what happens elsewhere around the
UK.

Some of us
write Blogs on the internet, although I confess my own was done as an online
diary, and never expected anyone to read it let alone send an answer back.

Campaigning
to the local MPs about dementia projects is a good way to keep going, although
many of the MPsare not interested in
this illness

Years before
the DEEP Project got going, I was proud to be asked to speak to a group of MPs in
the House of Commons at was, theLaunch of
the Cross Party Group on dementia

That group is
now a lot bigger than it was at that launch, so it proves that from small
acorns grow large trees

Let us go out
and grow a new tree in the North East and name it the DEEP Project

Thursday, 3 October 2013

I had a good night at Northumbria University and my talk about living with Lewy Body Dementia went well, and we had lots of questions at the end.

These trainee Nurses had travelled in, to attend this event in their own free time which proved a lot to us, as they were truly dedicated to the job, and in this day and age spare time comes at a premium.

If I understood it rightly, I now have another three speaking events to plan for when I speak to the Nurses in the Lecture theatres as part of their training, but to be honest I cannot remember what I spoke to them about two years ago, so I may have to try to trace a copy or start all over again.

Last year I was out of this, as we were badly flooded at home, so I did not get involved in speaking events, but thats all over and I am back on track again, and feeling better for doing something positive, while helping others at the same time.

After this I have been invited to do another key note speech on Spirituality in Dementia, so that should be very interesting as the audience is open to anyone interested in this subject.

I may well have to rewrite the last talk, as that has been used in so many places since, the event so it will take a bit more time to change it a little where needed.

This is all to do with Northumbria University and Dementia awareness, as this University was one of if not the first University in the UK to become Dementia Friendly, and has been a real privilege to be involved in this process, as the work they are doing is really helping to inspire many other people.

Wednesday, 2 October 2013

Since I was diagnosed, I have noticed that I have changed in many ways and I confess that I just don't understand what is going on in the brain.

My tastes in music have gone a different way to what I was used to, something which was some pop music and a lot of classical to things like Freddy Mercury and Queen along with one or two others. These were things I never liked before and it was hard to work out. I also like Eric Clapton, something which was odd years ago.

Then I noticed that my tastes in Food had changed completely, from being slightly conservative as my wife said, never eating any foreign curries or other food. To the present stage where I can eat anything, no matter who spicy or that it is, and what is more I would if left to my own devises eat things like this every day,

The other day it was noticed that my political views have radically changed, something which came as a complete shock to me.

I used to be conservative in my views but I think that came from the time that the conservatives were middle of the road unlike now where they are to the right. My mother was always conservative and my father being a miner was always labour, and as I was closer to my mother when I was younger I took her side of the argument and it stuck with me all of my working life.

However now my views seem to have gone completely to the left and I simply don't understand it at all, because I was never like this.

I know that I cannot always think logically any at times, and that really stresses me out after years of being an engineer, and there are times that I think people are doing things that I don't like, but I am sure that is all down to changes in the brain, and this always happens when I am tired or not well.
So what on earth is going on in the brain to make all of these changes in a few short years.

I have come across other people with the same diagnosis "Lewy Body Dementia" and they have the same problems, so is it just this variation of dementia or all dementia's which cause this issue. It would be every interesting to learn about this from those who understand this illness better than me.